Multiple Sclerosis and a bid for freedom.

you never know what someone is dealing with behind closed doors…I share a lot but there is something I am holding back on …..

However loud my laugh is, however big the grin …. somewhere trapped inside my body is a girl afraid for what her future holds …she’s fighting daily, a battle that cannot be won …she’s fighting a battle that leaves her feeling grateful for each passing day that feels ok’ish, but afraid of what tomorrow may well bring ….that girl is the 10 year old I’ve spoken about often in my blogs ….and yes…she’s afraid …I’m afraid ….. 

Lock down gave me thinking time, research time planning time, but is time really on my side? 

The answer sadly is no …….. 

…You see lockdown stirred many an emotion within me as my dear mum diagnosed with lymphoblastic leukaemia (a child leukaemia)at the age of 32 spent months in isolation after aggressive chemo and a bone marrow transplant …sadly although the transplant was successful she didn’t make it ….

Isolation for me shielding was tuff , my mum did months of isolation and I know now how hard that must have been for her …

I will speak openly about my mum and with so much pride … her death was not in vain …back then the procedure was ground-breaking she underwent the first bone marrow transplant in the South …. it’s because of my mums strength and belief in the professionals that she bravely endured the pioneering medical treatment, a guinea pig in the eyes of haemoglobin specialists in the hopes they would save her life ….. but now many years after her death her battles and endurance shine through daily because she is that lifeline to many children and adults alike that now survive leukaemia ….. and ring that bell ….

So why am I so stirred emotionally since lockdown ? And why do I feel sad most days as I watch people going about their daily business…. We all moaned about wearing the mask in shops when the law was passed …It’s something I find hard to do because a mask takes me back to visiting my mum in hospital …the “don’t hug or touch your mum in case of infection “now relived a generation on as my daughter stood on the other side of the front door are hands emotionally linked as they touched the glass …..as difficult as it was at 10 (and I never dreamt in a million years it would happen again ) at 45 its no easier ….isolation and fear an unkind combination but not a new experience for me …. and I now feel many emotions that my mum must have felt in her darkest days …. lockdown was so hard and very revealing….. 

But I am fighting a different battle…. 

Admitted to the acute admission ward with a suspected stroke in 2017 aged 43 ended with an admittance to the stroke unit at Bournemouth hospital and over 24 hours the prognosis changed …. First a stroke then perhaps a tumour because my symptoms over 24 hours worsened ….. 

A neurological specialist was brought in and the outcome after 10 days under the amazing care of the stroke unit and intense steroid IV drips turned out better than expected, but still very dismal… 

Multiple lesions on the brain left a prognosis of multiple sclerosis and it took 9 gruelling months before I was able to walk with any kind of confidence again ….did I sit and cry …behind closed yes I did it released the pressure building up ….but i knew I had no choice but to battle on…

Many say “wow you look so well” and I do …but the damage and constant pain isn’t on show unless i let you see it …

The close family and friends knowing full well that although i have done incredibly well i am miles away physically from the girl i was prior to that life changing day …

10 march 2017 and my stay in hospital was a sad time because I endured those 10 days whilst remembering the death of my mum which happened on the 11th march back in 1984 ….why was I travelling a path so similar to one our family has walked before… I was helpless devastated angry afraid and confused…  

I spent months in rehabilitation strengthening my legs and learning to walk again. I learnt to hold my arms up again in the hopes i would return to hairdressing at some point, i learnt to keep my balance with poor results , and then my swallowing started to deteriorate followed by bowel issues and so the list goes on …when I was in hospital I couldn’t even remember how to draw a square or put 12 digits on a clock face …my family looked on amazed as I overcame each obstacle and the team of professionals worked along side me ….learning to put one foot in front of the other …learning to get up from the floor if I fell …learning to travel my eye line up at a slow speed to stop vertigo setting in …weight training to lift a kettle .. leg casts were taken to help me drop foot…i was in the physio suite werkly learning to walk first with a rollator then sticks …now i use both reaching into my tool box of tricks to help me through my days…..finding the spoon analogy the most useful of all (look it up ) what had become of my life and where would I end up ….I felt so sorry for myself … 

I had suffered an acute neurological episode leaving my body as well as my business in tatters, my beloved childhood sweetheart and husband of 27 years (and stronger than we’ve ever been)stepping up to be the sole income provider and my carer and the close family and friends stepping up to rally around for both of us ….

So during lockdown I quietly started seriously researching. I knew of an amazing procedure available but until recently and the fact that lockdown had started stirring up old emotions had only been a ‘perhaps one day’ kinda dream, a dream that with your help now could become a reality for me … 

Sadly I discovered HSCT was unavailable to me in the UK because i didn’t fit a lot of the criteria set out for this treatment on the NHS ….i have to be worse than I already am which is mad …. 

This treatment is strangely the same as my mum went through 33 years ago, except it would be my own bone marrow that would be harvested then chemotherapy given and then the day i long for ….and as my mum says in a video recording on a well preserved cherished clip, safely stored cassette Fred Dinage from TVS south today reports from boscombe hospital “its the day I’ve been dreaming of“…

she thought she’d beaten cancer winning freedom from the disease …. 

Back when my Mum needed a transplant Tenovous and the local community of moordown where I grew up along with the wider community of Bournemouth Poole and Christchurch were challenged to hit a target of £250’000 in the bid to find a cure for Leukaemia and now my family and I want to reach out in the hopes that i can access treatment and give me the quality of life and the end of pain … but the biggest hope is that I can end my daily fears of what is to come … 

I would love nothing more than to give up my gruelling weekly injection treatment horrified to read that my injection is produced by recombinant DNA technology engineered chinese hamster ovary cells into which the human beta interferon gene is introduced …. copious amounts of nerve blockers and yes antidepressants… even those you think are strong need help at times …

This new birthday that i dream of is a” stem cell birthday “celebrated when the bone marrow is put back into my body giving me the chance of stopping Multiple Sclerosis dead in its tracks…. 

A new immune system will develop giving me a chance of stopping this chronic and debilitating disease before it takes too much more from me …. and with no recurring myelin damage a chance that the new pathways my brain finds to send messages to my currently failing body a chance to sustain a healthy body again

So where is the next chapter of my life taking … 

Mexico is where I can go for this treatment but it comes with a price tag of £43000 . 

This gives me a 1 month stay in the hospital Clinica Ruiz Mexico whilst I undergo treatment , a nurse and care package as I proceed through aggressive chemotherapy and the all important globally recognised specialist who will perform the bonemarrow extraction and who is highly qualified in the field of stem cell treatment. 

We as a United family are hoping to make a dent in this figure and send me on my way to celebrate that new birthday I currently can only dream of …and we are sending a heart felt plea to you for support ….  with covid causing mayhem fundraising is a challenge andcthis is where i turn to you all …..

can you help ? … perhaps hold a raffle or give a prize. Do you own a pub and would consider hosting a pub quiz or a music event ? would an auction work? 

Crowd funding is now in place and any donation and sharing would be most gratefully received. https://gf.me/u/yph2in

They say media is a powerful tool and I hope and pray that gofundme gathers momentum to get me to Mexico sooner rather than later ….

love and light to you all and thank you from the bottom of my heart for your continued support

love kirsten xxx

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